Monthly Archives: April 2016

Aside from this blog, I really enjoy sharing my story with others. Over the last couple years I’ve been able to speak to other heart parents and healthcare workers about my journey with Nolan. I love helping people know they’re not alone or open others’ eyes to congenital heart defects. Recently I had a chance to take my story a little more “mainstream”. There’s an amazing program for creatives here in Charlotte called CreativeMornings/Charlotte. They set up free monthly speaking engagements where they bring in speakers to inspire others with their stories. It’s really awesome stuff. A couple weeks ago, CreativeMornings/Charlotte was holding an event during a local weekend art showcase called BOOM Charlotte. For this “Audience Takes the Stage” event, 6 people were chosen to speak for about 7 minutes on the subject of risk. I was really excited to be chosen as one of those people! So in the morning we gathered in the Plaza-Midwood neighborhood here in Charlotte and we all told our stories to an audience who mostly never met us before:
It was a really great time! I got to hear stories of hope, dedication, and perseverance…all tied to risk. I enjoyed my time up there on stage…but 7 minutes FLIES by! I talked about how my journey with Nolan inspired me to write this blog, because discovering your child has a CHD is like stepping into the unknown, and I wanted to help others as they make that same journey. That’s a lot to pack into 7 minutes. So now that I have no time limit, I want to share with you some of the things I spoke about and how they can apply to you as a heart parent. You see, it’s not easy to share your story…but if we can do so, we should. The reward is greater than the risk and you can change the course of your life, the lives of others, and even the future of CHD research. So check it out:

The Risk of Being Vulnerable
This was one of the big risks when it came to writing this blog. There wasn’t a lot out there at the time for heart dads by heart dads. But the bigger thing was not just telling a story, it was being open and honest about it. Talking about the times I was scared, upset, frustrated…even talking about tearful moments. Last time I checked, most guys aren’t signing up to talk about that kind of stuff. So I choose to open up as best I can about it and it’s not easy…many times I’d prefer to tell highlights of the story. Being vulnerable is a big risk because there’s a chance – believe it or not – that you reading this might think that I don’t have things together at all. And – spoiler alert – I don’t have it all together. No one’s perfect and life is a process! When you choose to share your heart journey with others, you’re also making yourself vulnerable…but if you take the risk, it will pay off!The Risk of Facing the Past
Being a heart parent is like climbing a very steep mountain. You work very hard just to move forward and hopefully leave all that old mess behind. When you choose to share your story with others, whether personally or through something like advocacy, it causes you to turn around and face those things you’ve put behind you. The surgeries, the recovery, the hospital smells and sounds. All of it. And if you’ve done it, you know that sometimes it really hurts…like re-opening an old wound. Sometimes we don’t want to talk about it, and I understand that feeling. But when you choose to do that, I gotta tell you: not only do you help others, but you start to heal yourself in the process.Why the Risk is Worth It
I know that life sometimes feels like an ocean bashing you up against the rocks, but one day you’ll climb up out of the water and onto those same rocks. And you can choose to walk away or withdraw or you can choose to be a lighthouse for others. I hope you choose to use your story to be a light. Tell your story. Whether you help one or help a hundred, it’s always worth it in the end. Is it easy? Not at all. But you can be a fire and every fire starts with a match and every match is lit by friction. So how do you get involved?

· Join the tons of CHD facebook groups and talk with others. They need you!

Sharing your story is like stepping into the great unknown…it can be scary sometimes…but remember when you started this journey? You were stepping into the unknown, too, and now you can guide others who are now in the same place.
To learn more about CreativeMornings/Charlotte, visit Charlotte is Creative

So before you say anything, I realize I am WAY late on this post. Better late than never, right? It occurred to me that I never posted any kind of recap on what I was up to for CHD Awareness Week, which – if you remember – was waaaay back in February. So here’s some background:

I wanted to do something that raised CHD Awareness but also gave back to the community. Sometimes that’s a really difficult thing to do. A couple years ago I did 32 acts of kindness for my 32nd birthday and it was amazing, but it also talk almost all of 4 days to complete and I needed something that could be accomplished in one day but was still impactful. The problem was, I couldn’t think of a single thing. I loved the idea of acts of kindness but how to freshen it up for 2016? Then the answer came…a heart. But not just any ol’ heart: a heart that gave back and raised awareness. You see, the plan for this year was to do 10 acts of kindness in my area in 10 specific locations…and when it was all said and done and all those locations were mapped out, it would look like this:

At each location I would leave behind information about Congenital Heart Defects. So after coming up with a plan and coming up with all my stops, it was time to kick it off on the morning of February 10th, which was right in the middle of CHD Awareness Week.

Stop #1: Nolan’s preschool

The first stop was to Nolan’s school: we wanted to bring some heart balloons and treats to his teachers to show them how much they really mean to us.

Admit it, he’s stylin’

There are not a lot of preschools lining up to take a kid with a heart defect AND a feeding tube. But they graciously took Nolan once they saw he so desperately wanted to be with his twin brother in school. And it’s been so great for him: he has learned a lot and his teacher is the BEST. The visit went nicely and I think Nolan enjoyed giving out the balloons and CHD awareness info. And then we were off to the next stop!

Stop #2: Mint Hill Public Library

This stop was a lot of fun because we made some really cool sun catchers out of red and blue beads (CHD Awareness colors) to bring to the library so they can be displayed in their front window.

We also donated a few books, including “My Brother Needs an Operation,” which is a CHD book that was donated by the super awesome Baby Hearts Press (please visit them here, and buy like 10 books!). Nolan loves books and was excited to bring some to their staff. Wanna know something wild? So while I was planning this particular stop, I was emailing the manager of the branch, who was very helpful but wasn’t there yet when we arrived. When I followed up with an email thanking him, he told me he also had heart surgeries in his youth, “with the scar to prove it.” How awesome is that? It’s amazing the connections you find out there!

Stop #3: Robinson Presbyterian Church

So we were doing well on time (I was trying to keep on a schedule) and everything was going quite smoothly. This stop, though, was one I was really unfamiliar with and ended up being one of the most touching. You see, when I came up with this plan of a heart-shaped map, I drew the heart first around the city then worked on figuring out what fell along that route. Sometimes that was easy, sometimes it wasn’t. In this case, my Google maps search found this church in Charlotte. I’ve never been there and to be honest I can’t recall ever even passing by it before. But I found out that they had a ministry called Room at the Inn, where during the colder months they bring the homeless in and give them a warm meal and a warm place to sleep before loading them up with more food and some toiletries. I offered to collect some toiletries for their program, which they were happy about. I collected these by hosting a pizza party at our house and having attendees bring some toiletries to be donated. So we ate good and we did good: thanks all my friends and neighbors!

Just a few of the items we collected

Anyways, while I was arranging this drop-off, the guy on the phone told me no one would be in the church office, but the lady who ran the church preschool would be there and to drop off the items with her. No problemo. When I arrived at the church, I was also greeted by a reporter from our local NBC affiliate, WCNC. He was really awesome and wanted to share our story and follow me around a little bit. Nolan thought that was awesome. I walked up to the preschool door and rang the bell: holding a big bag of toiletries, a toddler, and being followed by a cameraman. This was gonna freaking this lady out, I was sure of it. But when I explained to her what I was doing, she was overcome with emotion. Apparently she was just told “Some guy is dropping stuff off for the homeless” but she got no other info. Turns out a very good friend of hers in another state had a child very recently who was born with a CHD and just went through their first heart surgery. I totally didn’t expect this. We chatted for a bit and she got to see Nolan and how well he’s doing. At the end I gave her a big hug and thanked her, and she instead thanked me…she told me it was the best part of her week. I can’t express how touching this was…and how clear it is that CHDs affect us all!

At this point I said goodbye to my wife and Nolan so they could head back home and get out of the cold. Off I went with the cameraman to more stops!

Stop #4: Center for Community Transitions

This is another group I had heard of before but didn’t know much about. When I looked them up online I found that they’re a program to help those with criminal records and their families turn their lives around. A big part of the work they do revolves around schoolwork and tutoring for kids whose parents might be in prison or just getting out. For this program they needed school supplies and I was more than happy to help. So I brought a couple bags of supplies to the Director and Volunteer Coordinator:

They were so thankful for the items and I told them this, and I will forever believe it: I hope that those supplies can lead to a child somewhere in our community being VERY successful in school…and I hope that kid grows up, goes to med school, and finds the cure to CHDs. Wouldn’t that be amazing?! It sounds corny, but I truly hope and believe! To find out more about the amazing work of this group, click here.

Stop #5: Urban Ministry Center

This was my final stop with the cameraman and he was a lot of fun to hang with. Urban Ministry Center is an amazing program that seeks to end homelessness in the Charlotte community by helping the needy find homes, providing food, helping with access to healthcare, and providing laundry and shower services.

This day in particular was pretty freezing, even for Charlotte, so as you can imagine the line to get in this place was super long. My job for the hour was to work in the mail center, which I found interesting. They allow the homeless to use their location for a residential address, so they can apply for jobs, receive important mail, and even apply for a free government cell phone so they can call about jobs and schedule interviews. That’s pretty awesome and I never thought about how much power was tied to having an address. So I hung out there behind the desk and whenever a neighbor would come asking about his or her mail, I’d check their ID and see if there was anything waiting for them. Some people didn’t have anything and they were cool with that…some people had stacks of stuff…some people were upset because they were waiting on something. Nothing too out of the ordinary, though, and I really enjoyed my time there. There were SO many people waiting for a hot meal and for other services…it really made me focus on just how good I’ve got it in my life, even on my absolute worst day. I still have a place to sleep, food to eat, and clean clothes. We take so much for granted. To learn more about Urban Ministry Center, click here.

Stop #6: Levine Children’s Hospital

You know there wasn’t any way I was doing all this and not giving back to the place that saved Nolan’s life, right? I always love going back to visit our “family” in the CVICU. As a visitor, of course. I brought the CVICU staff some more of those sun catchers as well as the heart balloons. But the big part of my visit was to present them with a very special book. In the days leading up to this, I reached out to heart families in our area whose kids were treated in that particular CVICU. I asked for stories, notes, and photos to be included in this book of thanks. The goal was for the book to be kept on the unit so that whenever the staff was having a hard day or was feeling down, they could flip through the pages and see the proof of their hard work and the many lives that were saved. It made me so happy to share this with the staff and I could tell they were genuinely touched by it. We wanted to provide something with real meaning for these folks, and I think we did well.

It’s always crazy to be back on that unit and hear those familiar sounds. I told them Nolan and I would be back soon…but not for long. And that hopefully we’d never have to see them again (of course I meant that in the nicest way possible). Love you guys!

At this point I realized I was starving like a BEAST. So after getting some grub, I was off to the next stop. And I had to hurry because I was a little bit behind schedule now.

Stop #7: Police & Fire Training Academy

In a past life I used to work for the police department as a civilian employee and enjoyed my time there. One thing I realized was that police officers really like to eat good stuff. So I stopped at a local Panera and picked up a bunch of bagels to bring to the Police & Fire Training Academy for the staff and recruits. It was pretty fun to be back in this place, it’d been so long

The receptionist in the lobby was so friendly and we spent time talking about Nolan and his journey. She said she was so happy someone came to do something nice for their team and that it would go a long way. She said she’d share Nolan’s story with everyone and their thoughts would be with him. Can’t ask for better than that, right?

Stop #8: Someone’s About to Get Caffeinated!

So this is the point where the stops became quicker and I don’t have any more photos, but they were still fun. At this stop I pulled into the drive thru at Starbucks and ordered for myself and then paid for the person behind me, leaving behind some CHD info. The barista at the window read over the little card I gave him and he was like, “This is really cool…my daughter works at the ICU at Levine Children’s”. Small world, right?

Stop #9: Another Panera

This stop was kinda funny because I planned to buy someone’s lunch at Panera but didn’t exactly know how to execute the plan since when I got there I was the only person in line. Whoops. So I acted like I was pondering the menu…for a looooooong looooong time. Finally a man came in with his mom. That’s when I pounced: I ordered a gift card and then turned it around and handed it to the woman with the CHD info and said “Enjoy lunch: have a great day!” and left. She looked at me like I was NUTS. And yes, I am. I ended up getting a very nice email from that gentleman about a week or so later. It was really cool of him to reach out to me!

Stop #10: The Final Stop – Charlotte Pediatric Clinic

While Cardiologists get all the fame and the glory, I wanted to take some time on this day and recognize Nolan’s pediatrician, who is an amazing doctor…and an amazing human being. Seriously, Dr. Prosser makes sure that there’s always an extra nurse available to help when my wife visits and so she won’t have to wrestle all 3 kids during the whole visit. She’s super flexible and kind and makes us feel welcome and like we’re family. So we brought her and her staff some flowers and balloons and cupcakes. A very sweet ending to the day!

I was thankful for the opportunity to take a day off work and run around the city doing fun, nice things for people. It’s grounding for me to know that there’s so much need and so many great people doing hard work to meet those needs. Puts my struggles into perspective for sure. Plus I was able to spread the word about Congenital Heart Defects, and I know deep down inside that will make an impact too. What will CHD Awareness Week in 2017 hold? I have no idea, it’s too early for that. So in the meantime, please check out the WCNC story on my CHD Awareness Project: Charlotte Dad Honors Son.